Well, we now have something new for Hank's sundowning - seroquel for sure and lorazepam, if needed. After two days in the hospital we at least have a plan. No wonder I was feeling over my head - so all of this is much better. This is the first time our family doctor has been involved with AD symptoms, since we relied on the research doctors in Portland, which was now only annually. It is such a relief to have a doctor we can see whenever necessary that is just a few minutes away. And, he is a friend from the community so knows Hank as a person. Now that he has been in the hosptial a home health staff will be making a visit. If any of you are also dealing with PD our doctor said Sinemet can cause paranoia, so that's another thing to consider. (Hank said not to tell the staff in the hosptial but he thought he'd get better care if they weren't behind closed doors playing poker!)
It's funny to go back and read my own posts and know what I thought would work doesn't! I've finally been able to get DH to sleep, but now around 2 AM he wakes up with anxiety, pacing, back and forth to the toilet. I am up while he is doing that - it's impossible to rest with this going on. I read about using Melatonin - 6mg. sustained release. Has anyone tried that? Funny that I talked to the pharmacist today and decided to try Melatonin, but bought 5 mg before I read the article just now. It takes a while for any effect - hopefully I will still be sane by then! Sunshyne - I looked over the article your inserted and had to laugh about being sure he is not overly tired. If sleeping most of the day is tiring that is the only way for it to be the cause. I've tried to keep him up more during the day, but that doesn't seem to change what happens at night either. Now with hearing difficulties I would have to shout in his ear if I were to try reading. What a life!
bluedaze - Thanks for the suggestion. Isn't is surprising the doctors will write all these prescriptions when something natural might work just as good, or maybe even better?
Okay, here I go with travel tale again: A few years ago, I went to the Peruvian Amazon and for complicated reasons was completely on my own with a private guide, going from lodge to lodge. We went to this great ethno-botanic garden with a dear medicine man. He goes out into the rainforest (p.c. word for jungle) and finds plants with medicinal virtues, and brings them back into this big garden and plants them and teaches people from more "civilized" societies about their powers. He dressed me up - or rather my mosquito bites - with some bright red sap from I forget what tree (it was called dragon's blood), and the bites disappeared overnight. Well, we had been joined for this day by a rather painfully hip BBC reporter (she really was; I googled her later) and her brother. She kept interviewing the guy and sticking the mike in his face. She was absolutely blown away by the notion that there were all these effective medicines out there that weren't getting attention. Of course they were and ARE getting attention but she much preferred to think that she, SHE, had found this amazing source of healing for all mankind!
i just got the response i sent to my brother who is a pharmacist. he says the melantonin is an excellent sleeping aid and is of of the more safer choices -he recommends the 3mg sustained release to get about 6+hr sleep as its eliminated rather quickly by the body if its not the sustained form. he says its naturally produced by the pineal gland in response to darkness as in 'sleep'- i couldnt use the 3mg is was too much for me, i only need the 1mg form and it zonked me out. i am maybe going to use for DH too but will ask his dr soon. you can find at walgreens or any pharmacy or nutrician store. divvi
haha.. frand, hes kind a knowit all like sunshyne:) only in the pharmaceutical world..haha.but he is frank with me when i ask and says most of the drugs out there can do alot of bad as well as good, and you have to outweigh the choices-.he just got me hooked up to try to get on bioidentical hormones testing soon so i can counter the 'flashing' situation. funny he is a retired pharmacist by trade and keeps up with what interests him, but thinks using natural aides is the better way. as we know there is all to many horrible unwanted side effects in alot of our meds and some we dont even know about yet. his advice to me personally has always been to try to keep the body in good shape and with all the natural essential vitamins so we dont have to put this crud into our systems.:) he also told me to use the saw palmetto for DH prostate instead of the med i am using as it works well without all the negative side effects, this is whaat he does best:) divvi
No, he looked kindof like Ray Walston - dating myself, My Favorite Martian. But very sweet and funny. Of course none of these guys speak more than a few words of English. Actually, he's at this screen: http://www.briegull.com/Peru05/Amazon/rainforest/index.html
Earlier on that trip, I'd been on an OAT tour with zoo friends. One of our visits was with a curandero (healer), who performed an extremely touching ceremony (and no, it's not because - or just because - we were chewing coca leaves). Basically he gathered up tokens from each of us and bundled them up, and touched us on the head with the bundle then burned it. I'm not a spiritual person but it was one of the most moving ceremonies I'd ever been to in my life. And he's here: http://www.briegull.com/Peru05/Cuzco/curandero/index.html
This doesn't get into the research I helped work on in Rome in 06 again on botanicals, this time how ancients in Rome and even Greece used plants for healing.
Divvi - did you ever ask your husb's dr. about the melantonin for your husb to help him sleep? What was the outcome? And is that an 'over the counter' med? I am thinking we might have to do something in the near future too. Thank you!
Jav - You mentioned in a prev post here that your DH was taking trazadone...is that still working? I liked what you said about it not being "addictive"...Thank you!
I bought a bottle of Melatonin and it made no difference for Hank. Since I have it here I've tried it for myself and it doens't help. It isn't the time release, but doubt that would make much difference.
frand-sorry for the sleep problems. My doc suggested magnesium which is a smooth muscle relaxant along with the melatonin. Melatonin comes from 2mg to 5mg. I don't yet have your level of grief but thus far it works for me.
Natsmom, my brother retired pharmacist got me to take melantonin OTC time released for me. one mg. was enough for me it zonks me out so i dont take it often. depends others may need more, he himself and wife take 3mg /nite on regular basis- i have been using benedryl for DH per neuros ok as it doubles for sleep and sinus for DH for now. if he gets where he has up/down later i will ask about the melatonin for him. would rather it be sometime 'natural' if possible. and you can buy any pharmacy. hope this helps, divvi
Magnesium is a smooth muscle relaxant? That explains why the neurologist said take Slow-Mag (it is slow release) to take care of the night foot and leg cramps. It does work pretty well most of the time, and when I do get one now it is easy to deal with (feet on the floor and a bit of walking).
I am assuming this could be a form of sundowning. The last couple weeks my husband has started going from the house out to the garage, at least 10 times a day, maybe stays out there 10 minutes or less then back in to start over again. In the past he would stay in the garage hours at a time, organizing his golf clubs. Another stage, another day.
I don't know if DH is sundowning or not. he just sort of wanders around the house and picks up stuff. looks at it and then puts it down. Occasionally, he puts it 'away' and where that is, is anyone's guess. This is done mostly mid-day. He has very little activity after supper. What is this? Or is it anything at all?
Mawzy, my husband has been doing this for over a year. However, about 5:30 p.m., he goes outside and starts either pulling weeds out of the flower bed, or leaves out of the white rock patio by sitting down and just plucking slowly. He'll stay there until we go to him and help him up and tell him supper is ready. Then, we help him wash his hands (he can't get them clean by himself any more), and he'll go sit down and eat with us.
Then sometime between 2 and 4 in the morning, he'll get up, go to the bathroom, and get dressed and try to leave the bedroom (he can't - key-locking doorknob) until he either lays back down or nudges me awake and I tell him "not until the alarm goes off" and I roll back over and hope he lies down! Sometimes he'll go back to sleep and sometimes he'll watch a movie. Since he can't leave the bedroom (bathroom is attached and he can go in there too), I can safely go back to sleep.
We play "hide and seek" every day when I get home because he's picked up something, walked into another room, put it down (or up) and picked up something else and taken IT to another room! We make a game of it so I don't get frustrated. <grin>
Bluedaze, I just pour me a glass of red wine, kick off my shoes, and start looking. <grin> If it takes too long to find everything and put them back, then I just throw a salad together. (It's better for me anyway!)
(By the way, I started a diet to lose at least 20 pounds before the Caregiver Cruise (not wanting you all to see me in my present form) and to date I've gained 5 pounds! Maybe I would be better off not dieting! <grin>
Thanks again Weejun, I am reading everyones experiences with this wretched sundowning as I now believe this is the cause of my grief. What he's doing is the same as others are saying, the Lexapro doesn't work for him. Hugs and thanks.
I'm not sure my DH is sundowning because he is fine in the evening. Three times in the past week he has gotten up thinking he has heard someone at the door. This morning at 3.00am I woke up to find a light on in the living room, DH was in his bathroom with a flashlight thinking he had heard someone again. I told him to go back to bed that no one was here. He did go back to bed and is still there at 8.00am! I sur hope he isn't starting with sundowning.
My hb is up and down all night. Gets into things like a kid. Keyed deadbolts on all doors, lock pantry, and now I'm going to do what I've been threatening: put a bicycle box on the fridge. Yesterday gp said to stop the nighttime namenda and lisinopril and watch for about 3 weeks to see if there's a difference. Would prefer to take away meds to see if behavior changes rather than add. I'm for that IF it changes. I suggested a baseball bat. I keep telling myself all this would be easier if he'd been my soulmate, if he hadn't been abusive to me and kids. I was too insecure to leave early on.
Zibby it must be doubly hard for you to care for a husband who isn't your soulmate. I think many women of our generation put up with a lot because we felt it was expected of us. I had a good marriage but was very happy to see my girls end their less than successful marriages early on.
I thought my DH was sundowning, but he really doesn't have any symptoms in the early evening. However, he wakes up during the night roams around & is disoriented & has some aggression towards me because I am stealing his stuff etc. Since he refuses to go back to the neurologist I am depending on my family doctor who told me that he will help me as much as he can. So I called him yesterday & told him about this & asked if he could prescribe some Seroquel because that is what I read about here. He told me that he would consult with his partner (his daughter who is in practice with him & just graduated from med school in the past 5 years) & he would call it in to the Pharmacy. I picked it up & its 25mg & he gets one pill at bedtime. Gave him his first dose last night & it helped him sleep well. He woke up once to use the bathroom & came back to bed when I told him to. When he woke up this morning something just didn’t seem right. He took a shower & ate breakfast, but I could tell that I was still “the enemy”! He then sat in the living room & fell asleep watching TV & slept on & off for about 2 hours. When he did wake up it was the same, did you steal my stuff, etc. I guess I was hoping that since Seroquel is an anti-psychotic I was hoping it would work immediately. Now I’m afraid that if he goes off the deep end I won’t know what to do. I know someone said not to call the police because they don’t know how to deal with dementia patients. Maybe he should go to the hospital so they can regulate his meds (I’ve seen that mentioned here too). Any suggestions? My daughter is going to have him come over & then I am going to call the Alzheimer’s Association for some suggestions. I’ll let you know what they say.
Elaine, I think Seroquel is a drug that works through accumulation: it needs to be taken for a while to build up a presence in the blood (not very accurate a description I'm sure but maybe our more medical friends will chip in. Give it some time.
ElaineH, marsh is a doctor so the info he's given is good. Takes a few weeks to work. Perhaps you should call his doctor and ask if a 25 mg seroquel in the am would also help. My DH is on 350 mg/day which is alot but he is functional and it has helped with his aggitation and sundowning. The police don't generally know how to deal with dementia patients, BUT if you feel your life and safety are threatened you will need to call the police. Be aware that they will most likely take him to the hospital for evaluation. In any case, if he goes to the hospital for med adjustment, it takes a minimum of 2-3 weeks to see what works and he will need to be in a hospital which has experience with dementia patients. DH was in a psych hospital for med adjustment and instead of introducing new meds, they took him off all meds because the dr said "he's so out of it". Horrible experience.
Thanks everyone for your feedback. I knew that I could count on you. The volunteer at the AZ website also suggested calling the police if I felt threatened or that my life was in danger. I'm sure my DH would go crazy if he was in a hospital for that long (or he would drive the staff crazy!)
My DH does the sundowning a lot. He paces the floor, stands in front of the TV for several minutes and when I ask him what he wants he says "nothing" But he also does what I call sunuping too. We live in a very small apartment with a front door and a back door and most mornings I hear the front door open and footsteps going to the back door and he opens the back door a minute or so later the backdoor closes and then he walks to the front door and opens and closes that and he does this back and forth thing for at least a half hour and then he will settle down for the rest to the day until it is time for sundowning. This gets worse when he has a change of routine.
Trazadone was the night time huge help for me....G went from getting up 10-12 times a night to once for the bathroom! He is also on Haldol now plus 200 mg of seroquel. Helps with the agitation and aggression....couldn't manage without it at all.
Give the seroquel some time. It may take a while and he probably needs a larger dose. They started my husband on 25mg at night but it was quickly raised. He now takes 50 mg 3 times a day. He was in the hospital twice for medication adjustment and I am sorry to say that he was worse both times by the time they were done with him but I think that it had more to do with upsetting his routine than anything. He resides in a facility now and even though he is stage 7 he does well with the routine. Even the aides remark about how he likes things to stay the same.